Charlotte Bevan, fierce advocate and activist, died at home January 13, 2014.
A mother of teenagers, wife of a farmer, parent advocate for parents of eating disorder patients, major contributor to the Around the Dinner Table forum, writer of short information films, Expert Carer for the Eating Disorders team at the Maudsley and Breast Cancer patient.

I have been sent a wish list. A list that many of us advocates would like to see published and endorsed by an organisation such as the IoP, the RCP or the AED. A list that we could take to treatment providers, when faced with situations such as this and this.

Now I am not advocating that we return to the bad old days of force feeding. The idea of vulnerable women being force fed is a horror deeply embedded in the British psyche and it is not one that we, as a nation, would want to return to. In my mind, it is somehow tied in with this horror. Today, ensuring a patient receives adequate nutrition, in a clinical setting (or Holloway!) is a much kinder, gentler procedure than the funnels and strapping of old.

All this talk of force feeding and NG tubes makes it appear that I am advocating all anorexia nervosa patients should be treated against their will and always have an tube inserted in a hospital setting. Well, in a way I am. Not the tube and clinical setting, unless the patient is unable to eat orally. Why unable to eat? Why not "won't" eat?

"Won't eat" implies some kind of choice. If we believe that a patient "won't" eat, it naturally follows that anorexia nervosa is some kind of choice: that a patient is "choosing" not to eat; that this is a weird mind over matter condition, a responsibility assumption.

If we assume that the patient can't eat, is unable to eat, because anorexia nervosa is a brain disorder (sorry ELT and Katie), a brain arrhythmia, a misfiring of the biological processes, a blip in neurotransmitters, the reasoning for "force feeding" becomes a little more clear. If you throw into the mix the understanding that the majority of anorexia nervosa patients are unable to understand or see how ill they are (anosognosia), perhaps you will begin to see that feeding an anorexia patient, even against their supposed "free will", is not a cruel imposition of society's god complex, but a medical necessity.

For most patients, refeeding via an NG tube in hospital is not the advocated treatment. The NICE guidelines recommend that refeeding is done at home, as this seems to have the best outcomes. The method with the best outcomes of all appears to be this one, Family Based Treatment (the Maudsley Method as manualised by Lock and Le Grange). As a parent/carer, once you understand that the patient is unable to eat, you quickly begin to realise that getting angry and trying to impose your will on that of the patient is a hiding to nothing. The realisation that the patient can't eat means that gentle encouragement and firm insistence, with a lot of love and confidence, is the best way forward. This is not "force feeding". This is a medical protocol.

So, you may then ask, what is the point of refeeding an anorexic patient, if they do not want to eat? If they want to die, why not let them, as some clinicians do (and are happy to write papers for other eating disorder clinicians explaining the logic of all this). The answer to that question is that many psychological symptoms are alleviated on weight restoration. Not all of them and sometimes there are co-morbid conditions to be taken into account but, in general, this statement is true. Once a patient returns to optimum function (a physical state at a level that the brain can begin neuroplasticity and heal the damaged pathways), many of most severe psychological symptoms begin to disappear. Conditions such as anxiety, depression, OCD may still be present but the patient is physically fit enough to be able to cope with them and respond to therapies without returning to restricting food.

You may have noticed I have been hyper-linking all over this blog. So why am I not hyperlinking the link between optimum function and the alleviation of psychological symptoms? I am unable to find any studies on this. It appears that for eating disorders, nobody has bothered to write a paper on the importance of full nutrition for psychological symptoms. Why?

So I return to the list (Thank you, MS).

- Patients do not choose to be ill

- There is no recovery without weight gain

- Being able to create the conditions for getting a patient to eat is the most difficult aspect of the illness to treat and needs a number of adults working together closely and effectively to make this happen

- Normal conventions of respect for patient autonomy and choice cannot be used when treating the very sick because they are too ill to make rational decisions affecting their care and wellbeing

- Comorbid condtions can be considered and treated at a later stage in the refeeding process but formal diagnosis in the early stages should be avoided as the brain is too malnourished for the patient to present as his/her 'true' personality

- Establishing a 'root cause' is unnecessary and irrelevant because once the illness and inability to eat has taken a hold then it has to be treated by full nutrition and weight gain.

5 comments:

A clear and well referenced introduction to the important subject of nutrition which manages to acknowledge the complexities both of the condition and of the historical perspective - and all in under 1000 words! Well done Charlotte.

I do think that patients with AN, especially 'longstanding' (I refuse to call them 'chronic') patients should be promised help with adjusting to life and any co-morbidities, as well as maintaining gained weight and good nutrition AFTER re-feeding. A big problem is that these patients are sometimes rapidly re-fed but then left to try to cope in a very anxious state, feeling utterly 'lost' in the world. They may be given therapy during the re-feeding process that is somewhat futile (e.g. 'body image' therapy).

One of the things that helped me enormously after having been stuck in AN for many years was the promise that I would be helped AFTER I had gained weight. I clearly recall my psychiatrist telling me that we would 'talk around in circles' until I had gained sufficient weight to think logically. He said that I had to press on with the weight gain and he would help me with difficulties that arose during re-feeding (e.g. horrendous anxiety) and help me to cope AFTER re-feeding.

Without long term support I would never have maintained the weight, or improved psychologically. This is the bit that the NHS and insurers may consider 'too expensive'. AN can be a difficult illness to treat and some patients may need quite long-term support.

You have emphasised the two points that I did expand on most appropriately - thank you. Firstly the therapy during refeeding point: I believe that therapeutic efforts should focus on refeeding during refeeding - how to cope with eating enough to gain weight, not on why you are not eating, what difficulties your mother may have had during pregnancy and birth etc etc. I also believe that long term therapy, after weight restoration, should be given FOR AS LONG AS IT IS NEEDED.

Our regular activities such as going to work, school, or just by chatting with someone need energy and other essential nutrients for the body to do it properly. Vitamins and other essential nutrients are really the vital components of the foods we consume every day. This means that consuming nutritious foods regularly especially fruits and vegetables can make our body healthy and do our regular tasks properly. There are also vitamin supplements available in most drugstores today to provide supplement for our body’s health. Eating vitamin rich foods and performing regular exercises are the best ways to maintain a healthy and disease free body. Thank you for sharing this wonderful article, I really learned about health.